Shouting Above the Noise: Autistic Life Writing and the Interdisciplinary Autism Research Festival

In this post, Anna Stenning demonstrates how life writing by autistic authors contributes to medical and cultural framings of autism. She also introduces the Interdisciplinary Autism Research Festival, which will take place in May 2021.

My current fellowship project aims to explore what life writing by autistic authors contributes to our knowledge of medical and cultural framings of autism. As part of this, I am helping to organise an Interdisciplinary Autism Research Festival with the aim to see what different disciplines bring to the paradigm shift that we hope is currently underway towards new way of understanding health in relation to autism. The urgency of this is registered by the fact that autistic adults are significantly more likely to die from suicide than non-autistic peers (see, eg, Segers and Rawana 2014), and this appears to be not due to autism itself but to the demand to camouflage autistic characteristics and to a lack of appropriate support (Cassidy; Bradley; Shaw and Baron-Cohen 2018). To address why this happens, we need to work with those who are experiencing the effects of this ‘psycho-emotional disableism’ (Thomas 1999).

‘Others cannot bear to be apart’ by Briony Campbell ©BrionyCampbell2020

Existing literary approaches to life writing by autistic authors such as Polly Samuels’ Nobody, Nowhere: The Remarkable Autobiography of an Autistic Girl (1992) and Dawn Prince-Hughes’ Songs of the Gorilla Nation: My Journey Through Autism (2004) treat the texts as illustrations of deviations from species-wide standards of communication, ‘narrativity’ and sociality (Happé 1991; Belmonte 2008; Roth 2018). The interest in alternative forms of relating and engaging with the human and non-human realms are seen as inherently pathological rather than as part of unique systems of value and meaning (Stenning 2020). The focus on a singular ‘deficit’ model of autism is both contrary to what autistic people tell us about their experiences and to the reality of difficulties that are highly individual and interdependent with cultural context. Often, however, the cultural context of autism is ‘re-written’ by those who work in a professional capacity to support autistics.

As often the case with cultural constructions of disability and embodied differences, those most attached to narrow concepts of human flourishing are situated outside of clinical or scientific fields. Literary accounts of life with autism are accordingly treated as though they are simply the direct transcription of experiences or as symptoms manifest in style. And yet, literature by openly-autistic authors is received as such not only within the autistic community but wider afield, as evidenced by Dara McAnulty’s prize-winning The Diary of a Young Naturalist (2020) and Katherine May’s acclaimed memoirs Wintering (2020) and The Electricity of Every Living Thing: A Woman’s Walk in the Wild to Find Her Way Home (2018). While some will claim these works refer to the experiences – and literary talents – possessed by only a very small number of autistic individuals who are somehow exceptional and privileged, the same comment could equally be applied to non-autistic authors who are deemed to have literary talent. And the fact that some autistic authors have gained recognition for their accomplishments has yet to allay the stereotype produced by earlier clinical framings that endure in popular culture – such as that autistic people lack empathy or imagination. The corpus of life writing and memoir by autistic and otherwise neurodivergent authors offers material to question both the normativity of aesthetic standards and the role of culture in reinforcing unrealistic ideas of what it is to be human.

If we consider life writing by autistic authors at a purely thematic level, we find commonalities with many other categories of artistic expression in terms of the desire for belonging, connection, social interaction, meaning and joy. Like work by other ‘minority’ subjects, it often pays attention to the pursuit of social identities and consequences of internalised stigma and shame. The importance of cultural, as opposed to sociological, work on autism is that it allows us to articulate alternative imaginings of what it means to belong, to experience desire, identity and affiliation, even as we experience impairments, without seeking to deny the difficulties that autistic people (as many others) and their families experience in having even basic needs met. While social scientists have a great deal to contribute to overcoming collective barriers to social inclusion and identity, it is the work of those in the humanities, perhaps, to interrogate the importance that we assign to such.

The medical humanities may, from this perspective, investigate the ethical and ideological components of existing medical practices and interventions in connection to autism. While the expanding knowledge of the corpus of life writing in traditional and new forms is one possible avenue for this work to proceed, and particularly helpful when it comes to understanding what count as ‘disabling’ conditions in their own lives or what produces joy, other forms of art are equally important. Performance and collaborative artforms challenge us to rethink our role as an audience member or viewer; visual arts can contribute to renewed attention to the embodied aspects of aesthesis such as synaesthesia; we also need to address reading practices that pay attention to the materiality of language (see Goidsenhoven 2018). Georgia Pavlopoulou, who is a psychologist, and Damian Milton, a leading critical autism researcher and sociologist, have challenged in their different fields the assumption that autism is defined by an absence of social relationality as it had been depicted in earlier epochs. Pavlopoulou has written extensively about the importance of relationships as a key determinant of mental health for autistic people (see, for example, Pavlopoulou and Dimitriuou 2019). Milton is best known for his research on the issue of ‘double empathy’ and how any difficulties that autistic people have understanding the thoughts and feelings of non-autistics are exceeded by the difficulties non-autistics have with empathising with autistic people (2012; 2016).

Pavlopoulou has been working with Jon Adams – who describes himself as ‘neurodivergent polymath, Synaesthete, mental health champion & artist’ – and the filmmaker and photographer Briony Campbell. Together, they have developed Flow Unlocked, which was designed to explore the effects of COVID-19 pandemic on autistic community members. The project was funded with a grant for UCL’s new East London site – and it focuses on developing a better understanding of relationships that matter to autistic people during and after the lockdown (Campbell 2020). The decision to run a second stage in this project into 2021 was the initial inspiration between hosting the Interdisciplinary Autism Research Festival in May of next year, which will bring together a range of autism researchers from very different fields and many early-career and postgraduate researchers.

‘The Imposter’ by Jon Adams

As part of this collaboration, I spoke with Jon Adams, who is the autistic visionary behind the Flow Unlocked Project, about his work and involvement with autism research. Jon set up Flow Observatorium in 2016 in the effort to promote the contributions of neurodiversity culture and to overcome barriers neurodivergent, and especially autistic, people face in engaging with art as an audience member or artist. Adams explained that most often, in similar ways, both art and research has involved neurodivergent people in the most inauthentic and dehumanising ways, as passive consumer or ‘object’ of study. He has worked with Milton on describing what participatory research with autistic people should look like, since the term is often used to describe tokenistic and alienating forms of engagement (Fletcher-Watson, Adams, Brook, Charman, Crane, Cusack, Leekman, Milton, Parr and Pelicano 2018).

Through his involvement in Pavlopoulou’s autism and sleep studies (Pavlopoulou and Dimitriou 2018) and his own work on autistic participation in research about autism understanding autistic suicidality and mental health (2018), Adams took on the role of workshop coordinator, working with autistic community members to explore the relationships that mattered in the lockdown. The results of Flow Unlocked project are still in progress but one of the central aspects was for Adams to document his own experiences in lockdown. Adams is a geologist by training and in response to Pavlopoulou’s ‘lifeworld’ approach to relationships that matter (Pavlopoulou and Dimitriuou 2019), he chose to write about one experience that had not been possible during lockdown.  His poem ‘Scattered Friends’ tells of his ‘ritual’ of collecting stones from a beach in Cornwall that will stay in his home for the next year before being returned, as visiting friends always contribute to the sense of belonging to the place we find ourselves in.

We will

I promise

    one day soon

      sing of honour

and dream of swimming

      once more

my brothers, my sisters

While the clinical gaze may encourage us to turn Adam’s words into something fundamentally unpoetic, the Flow Unlocked project created a space in which this work could begin to be read as it is intended. While not all the workshop artists responded in the same way to the confines of lockdown – for some, technological connections ameliorated physical isolation – the online sessions provided the occasion to make art that directly engaged with broader cultural concerns.

The IAR Festival  – which will be free to attend, supported by autistic co-researchers and facilitators and designed to be as accessible as possible – will create a for neurodivergent artists, researchers and our allies to explore autistic relationships, creativity and culture. It will address the barriers we face in communicating the relevance of embodied cognitive difference more generally. In this way, we intend to challenge the idea that there is one ‘central’ narrative (or metaphor) that conveys the experience of autism. As for anyone, the ways in which we experience our lives will depend on the strength of our connections to the people, places and creatures around us, and to the stories we tell.

Anna Stenning is a Wellcome Research Fellow based in the School of English at the University of Leeds working on the project ‘Remembering what really matters’: nature, culture and autism. She is on Twitter @anna_stenning.

 

References: 

Adams, Jon. 2019. “‘Where Do We Go from Here?” Identifying the Top 10 Priorities to Prevent Suicide in Partnership with Autistic People’. INSAR panel presentation. https://insar.confex.com/insar/2019/webprogram/Paper30112.html

Belmonte, Matthew. 2008. “Human, but more so: what the autistic brain tells us about the process of narrative.” In Autism and representation, edited by Mark Osteen, 166-179. Abingdon: Routledge.

Campbell, Briony. “Flow Unlocked: An interim reflection’, Flow Unlocked: an interim reflection”. https://ndsa.uk/content/flow-unlocked-an-interim-reflection/

Cassidy, S., Bradley, L., Shaw, R. et al. 2018.“Risk markers for suicidality in autistic adults.” Molecular Autism 9, 42. https://doi.org/10.1186/s13229-018-0226-4

Fletcher-Watson, Sue, Jon Adams, Kabie Brook, Tony Charman, Laura Crane , James Cusack, Susan Leekam, Damian Milton, Jeremy R Parr, Elizabeth Pellicano. 2018. “Making the future together: Shaping autism research through meaningful participation”. Autism. Volume: 23 issue: 4,  943-953.

Happé, Francesca. 1991.“The Autobiographical Writings of Three Asperger Syndrome Adults. Problems of Interpretation and Implications for Theory.” In Autism and Asperger Syndrome, edited by Uta Frith, 207-242. Cambridge University Press, Cambridge.

May, Katherine. 2018. The Electricity of Every Living Thing: A Woman’s Walk in the Wild to Find Her Way Home. London: Trapeze.

May, Katherine. 2020. Wintering: How I learned to Flourish When Life Became Frozen.  London: Rider.

McAnulty, Dara. 2020. Diary of a Young Naturalist. Beaminster: Little Toller.

Milton, Damian. 2012. “On the Ontological Status of Autism: the ‘Double Empathy Problem’”. Disability and Society Vol. 27(6): 883-887.

Milton, Damian. 2017.  A Mismatch of Salience. London: Pavilion

Pavlopoulou, Georgia and Dagmara Dimitriou. 2019. “‘I don’t live with autism; I live with my sister’. Sisters’ accounts on growing up with their preverbal autistic siblings”. Research in Developmental Disabilities, Volume 88, Pages 1-15.

Pavlopoulou, Georgia and Dagmara Dimitriou.  2018. “Autistic adults and sleep problems”. Lifespan Learning and Sleep Laboratory (LiLAS) report network.autism.org.uk/sites/default/files/ckfinder/files/Sleep%20issues%20in%20autistic%20adults%20PDF(1).pdf

Prince-Hughes, Dawn. 2004. Songs of the Gorilla Nation: My Journey Through Autism. New York: Harmony Books.

Roth, I. 2018. “Autism, Creativity and Aesthetics.” Qualitative Research in Psychology, 17:4, 498-508, DOI: 10.1080/14780887.2018.1442763

Segers, M. and Rawana, J. 2014. “Systematic review of suicidality in ASD.” Autism Res, 7: 507-521. https://doi.org/10.1002/aur.1375

Stenning, Anna. 2020.  “Understanding empathy through a study of autistic life writing: on the importance of neurodivergent morality.” In Neurodiversity Studies: A New Critical Paradigm, edited by Bertilsdotter-Rosqvist, Chown and Stenning. Abingdon: Routledge.

Thomas, Carol. 1999. Female forms: Experiencing and understanding disability. Buckingham: Open University Press.

Van Goidsenhoven, Leni. 2018 “Reading Autie-Biographically: The Field of Tensions between Language, Narrativity and Autism” [translated from Dutch]. Nederlandse Letterkunde Vol 23(1) pp 71-100.

Further information:

Bertilsdotter-Rosqvist, Hanna, Nick Chown and Anna Stenning (eds) Neurodiversity Studies: A New Critical Paradigm (Routledge 2020).

Project blog: Whatmatters.leeds.ac.uk

Jon Adams’ website: www.museumforobjectresearch.com/jon-adams/

Briony Campbell’s website: http://www.brionycampbell.com/

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